Honored Kid

Collin Roberts

Age 18
Collin Roberts Kid Photo

Location

Fort Lawn, SC, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

September 2007

Status

In treatment

Treated At

St. Jude Children's Research Hospital Levine Children's Hospital at Carolinas Medical Center

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My Story

Collin was diagnosed with a malignant brain tumor (Ependymoma) at the age of 2. He underwent an emergency surgery to relieve pressure on his brain then the next day underwent a 9 1/2 hour surgery to remove the tumor from the fourth ventricle of his brain. 10 days later, he had surgery to place a permanent VP shunt. He then underwent 33 radiation treatments. He was followed with MRI's every 3 to 6 months for almost 5 years when a new tumor was discovered in a different part of the brain (right frontal horn). He underwent another surgery to remove the tumor then 33 more radiation treatments to the entire brain and spine. He did well with the treatment but since has been diagnosed with cataracts,  panhypopituitarism and a learning disability as a side effect of all the radiation treatments. Now, 4 years later, he has another tumor. There is no standard of care for treating recurrent ependymoma and very few clinical trials exist. There are no existing treatments that are considered to be curative. Collin was taking a medication that slows the growth of cancer cells, but his tumor continued to progress. He recently had another surgery to remove the new tumor. Another gross total resection was achieved. Collin has recently been enrolled on a personalized medicine clinical trial at a local hospital. We are optimistic this will help to keep the cancer away. 

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